Do you know what it is yet?

Well yes and no. As some of you may have been reading my posts for a while now already know. I haven’t been well for a while.
It’s why posts have been sporadic for the past couple of months at least. I aim to do a little better since for my own peace of mind I have to still be able to do something.

I suffer with Endometriosis, hypertension, depression and have over the past couple of years been through quite a lot. At times it has really got me down and I haven’t always known which way is up. 

I am trying. Trying to get through whatever this is but knowing your body and how it behaves is a two edged sword. I have had Endometriosis, a chronic condition since I was seventeen years old but back then I didn’t know. I waited and went through a living hell that only those with a chronic condition will understand for another 18 years before it was finally confirmed.
8 years ago, I had a hysterectomy and thought that finally my life could begin. I’d been given a new lease of life. I was cured! 
Well actually no, I wasn’t. Although my health improved significantly for a while, it is an incurable condition aggravated by stress and can present itself in and around other organs causing unimaginable pain.
Fast forward to a few years ago when I started to get awful pain in my bowels and the old familiar dragging pain in my abdomen again. It’s easy to shrug it off thinking that if you don’t have the equipment anymore you shouldn’t have these pains and if you ignore it, it’s sure to go away.

I don’t like taking medicines. I have reacted to so many over the years in the name of testing and some have left with me long lasting effects.

Due to the Endometriosis I also have a high threshold for pain and am stubborn so tend to have an I can get through this mental attitude.

But… Dealing with the pain I have been in over the past few months has been unbearable at times. I can tell you that Painsomnia is a very real thing. 
I have on many occasions over the past few months sat in the GP surgery asking, “What on earth is wrong with me?”

I knew deep down that something was pretty wrong and that I needed to get to the bottom of it all. I have been trying to wrack my brains and put my finger on it, times and dates. I keep a diary to jog my memories I do not always put find details in it. 

Sods law prevails, there are a few missing pieces in my puzzle.

The GP has been understanding, sent me for lots of tests trying to help me find out the root cause. So many symptoms have been unexplained and put down to stress. Life has been unbelievably stressful in the past year alone, but longer than that. But I suspected that there was more to it than that.

I’m not clutching at straws but sometimes you can join up the dots.
My GP suggested that I may have Fibromyalgia brought on by my circumstances. 

It is a condition I had heard of but nothing more I felt I needed to do some research.

That is when I received a lightbulb moment. There are some things which mimic Fibromyalgia symptoms. But suddenly there it was, in black and white in front of me.
The question, Have you been bitten by a tick? You may have Lyme Disease…

Take this online questionnaire and give the answers to your GP.

I did the questionnaire. Almost every answer was yes to what I had been going through lately. Don’t panic I thought. It must be easy to find out surely?

When we were in Scotland it was Springtime. It seems like ages ago. The deer were jumping around the garden, all sorts of wild animals trotting past and came to see us. the cattle were in the field at the back of the house and the grass had just begun to grow for the summer. It went from looking like a lawn to a field in a matter of weeks. Between the sunshine. It rained a lot and grew so fast. There is too much of it for us to mow and too many underground hazards for heavier machinery to get in there. We were walking in pasture on a daily basis and picking ticks of the dog every time he came indoors. Thank for for spot on type treatments to protect him. The drops didn’t stop him getting them but I think it made them drowsy and easier to see. Since the weather was warm outside the dog slept on the bed during the day since it was the only cool place in the house. I felt tired a lot so sat with him on the grass outside in the sunshine.
I picked them off him and disposed of them. But one morning in early May I think it was, I woke up with a massive bite on my back. I didn’t remember being bitten the day before and it definitely wasn’t a midge, could it have been a horsefly I thought. I asked my partner to take a look. It was strange he said. Really red and about the size of a 50p piece and looked like a bullseye. In a couple of days of putting Aloe Vera onto it, the itch died down a bit. I thought no more of it.

I started to feel really tired again and my neck hurt for a few days. Had I slept in a funny position and strained it. I slept without pillows but it didn’t seem to help either way. For no reason and had a colossal headache which lasted for 5 days. All I wanted to do was sleep. I couldn’t get much done, it was a good job that I didn’t have to drive. I just thought that again it was stress. More rest required so I was sleeping roughly ten hours a night and still waking up tired. I felt as though I was getting the flu, I had a temperature for about 48 hours, felt feverish if it didn’t seem to turn into anything.

I thought I had escaped a bug of some sort. 

Within a couple of weeks when I suddenly kept getting excruciating pain in my hands and feet I blamed it on the damp. I couldn’t think of any other reason it could hurt so much. It was like cramp and fire at the same time, burning from the inside out. I rubbed my hands each night and day with hand cream hoping to ease the pain. Had I overdone some gardening he asked? No, I hadn’t actually done anything with them. 

It was frustrating.

I’ve had this pain before. The year before and last year. It wasn’t as bad as this. 

We came back South and saw the doctor who sent me for blood tests checking for arthritis and rheumatism we waited for the results. Full blood work came back with a vitamin D and calcium deficiency but otherwise it was Ok. I already take a supplement daily so started to take two.

In the weeks since then I started to get the shakes, tremors I can sit doing absolutely nothing and feel my whole body shaking. Sometimes you can see them. The fire in my hands and feet has moved to elbows shoulders and knees and ankles. What was happening only sporadically is now a daily occurrence. The pain is constant and I am concerned. I grit my teeth a lot. It stops them chattering uncontrollably my own reaction to shock and pain. My whole body aches. I keep waking up in pain and being really short of breath. Like someone has stolen it away from me unexpectedly as I walk along the road. The dog has become used to my telling him to slow down and wait for me and toddles alongside me. 
About three weeks ago she mentioned the possibility of Fibromyalgia and then I found out about Lyme. There were warnings on Facebook in May, a little info but I thought that we were careful and if we got rid of the ones off the dog we would be alright. You could see them on him, so we would be sure to find them on us too. Or so I thought… I read more, a tick can be the size of a poppy seed. So what hope is there if seeing that and removing it in time. Not all ticks carry Lyme, well I’m grateful for small mercies then.

So what do you do to find out?

There is a type of blood test to check,  it is called ELISA but these are not conclusive depending on what stage it is at. It can take several weeks to present itself. Meanwhile you feel like death warmed up if this is anything to go by. Not everyone gets a bullseye bite either.

My legs keep going numb. The week before last I collapsed for no reason. I went to sit down and my legs went from under me. I was exhausted I had only just got up, had a breakfast and a shower and needed to sit down again my legs were wobbly. This was worrying.

I got an appointment for Monday last week. I sat with my work coach who told me I looked so ill. She told me I wasn’t fit for work and she doubted I could be through the day let alone an interview. I told her I would see the Dr that afternoon. I asked for the test and told the doctor my concerns. He agreed it sounds like you have Lyme Disease we’ll send you for it. You’ll need time to get better, at least six weeks and you need plenty of rest.

My hands are failing me. I couldn’t do my partner’s shoelaces up for him. My hands just wouldn’t work. I couldn’t get the lid off the open coffee jar the other day. I keep dropping things.
There are days when I can’t remember what I wanted to say, mid sentence I am struggling with the end of it. I have pain in my head it is fuzzy. Not all of every day but it is unlike me. I have had spasms in my head, the electric noise comes and goes and a flicker in my eye.

My joints are all clunky just like the middle of a damp winter they feel inflamed and sore.

Last night the numbness in my right leg travelled all the way up it.

The other night I felt that I might be having a stroke. I lay in bed panicking in fear in case I couldn’t move, slowly things did again and I calmed down.

What would happen if I did? How would my partner cope? What would he do with everything in the loft? He can’t even get in the loft!

I went into the loft the other day for a while, I am trying to start thinning out the huge amount of things we have amassed in readiness for a house move. Going through the boxes I started to make a map of the loft so that thing will be able to be found. 

Horrible thoughts and nightmares fill my nights at the moment. It feels like another massive change in my life which is beyond my control. 

Is my fate in the hands of another? 

If I couldn’t walk how would I get around my current home? Would we ever be able to get back to our home in Scotland, fix it up or live there again? What happens if I become incapacitated suddenly? Or worse still had a stroke leaving me unable to speak or write. There is so much in my head I have to find an outlet for it. 

I have read so much about this disease in the past few days and yet barely scratched the surface of it. I have read that if left untreated for any length of time there are things that can be irreversible. There is a threat of seizure, facial paralysis, people are unable to drive.

I must admit that the thought of just any one of these things being temporary let alone permanent scares the wits out of me. At the moment there have only been days when I wouldn’t dream of getting behind the wheel when I can barely stand up. There are other days I have ventured out and have had to Steel my nerves and shakes before getting back in the car, gathering myself and taking pain killers. 

In the past few months I have become much more reliant upon others to help me with things where previously I had been fairly independent. But it worries me that if there is no one available to help, because they have their own lives to lead. What happens if there is no food in the fridge and I can’t get out to get it. Or prescriptions that are needed for either of us. What if we cannot walk our boy anymore.

Just how bad can it get?

There are so many unknowns and I am trying not to let my imagination run wild. I am trying to be strong about it. Not needlessly worry my already very stressed partner who will be having more surgery this month. He asked me the same question last night. I don’t know the answers. We were walking the dog it was the wrong place to talk about it. I began to read some of the things that could happen out to him last week, he asked me to stop. He couldn’t cope with knowing so where does that leave me?

At the moment I do not have the results of the tests, as my partner said yesterday this is like the longest wait ever but we are all pretty sure that is what this illness is. If they confirm this on Wednesday then the meds start and let battle commence.
I was thinking over the weekend, I wonder if this has been going on for much longer than since this May. My work coach said it first on Monday that I had been so ill for a long time now. I burst into tears. It was a shock to hear it. I remember a couple of years ago 2015 when we were in Scotland in August that year. I was bitten by something we thought it was a horsefly then. It was an enlarged bite and I reacted really badly to it, was in. We for a few days as I felt so ill. I can’t remember much else about it except that my partner had to drive me to a chemist in the nearby town for anti histamine tablets and hydrocortisone cream which I used for about a fortnight after. It occurred to me that if this was an infected tick bite back then it could (just could) be the cause of some of the last two years of medical problems. 

I guess I have no way of knowing for sure we will have to take each day as it comes and just deal with whatever it throws us as usual. 
God give us strength.

There didn’t have the results yet I couldn’t wait and asked for antibiotics. I am taking them and feeling still worse. I spent Saturday in bed and I haven’t left the house for two days. I have joined a Lyme discussion group on Facebook to try and find ways to ease the symptoms. So far this illness is scaring me, I am trying daily to rise above my fear.

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A little bit of Sparkle

26/4/17 There is something quite magical about standing on the top of a hillside at 2am brushing your teeth in the moonlight. The crisp night air and a sky of the darkest blue filled with stars. There was not a sound but for the crackling of the fire when my partner rushed into tell me that it was snowing! It is the very first time that I’ve experienced this up on the hill and although it had been so cold that we couldn’t feel our fingers and toes all day it was still unexpected at almost the end of April. But there we were surrounded by a beautiful crunchy layer of white snow, totally pure and sparkling peaceful and quiet. We took the dog out for his nighttime walk. He was thrilled. His Mama and Daddy wandering around and rushing up and down the garden whilst he ran and rolled and ate the snow he was in heaven eating it and prancing about. One happy pup we went back indoors to warm ourselves up and hoped that the power would not fail us in the night, we would need the electric blanket. Unfortunately all the cameras were dead by then so we only got a couple of pictures by torchlight.

I checked the weather report again last night and saw there’s a possibility of Thundersnow. Our boy would love it.

Northbound Journeying

Our journey up here was interesting to say the least. Our darling boy came on the longest trip he had ever been on in the car. He hated almost every minute of it and was very distressed crying and whining. He did not understand that it would be alright when we arrived. He wanted cuddles and reassurance it with his Mama in the front and him in the back it wasn’t possible. At nighttime he didn’t like the traffic noise of the lights of the vehicles behind us. It was a long Journey anyway it made all the longer by stress and tiredness. 

As we reached the border we were met with a beautiful red and orange sky, following the contours of the hills and mountains with silhouettes of the trees and occasional building or cottage.

Higher than our current landscape set way above our heads the colours did not reach all the way to the road ahead of us. 

It’s ethereal light creating another world somewhere above ours where all was at peace. Our own route now being cast into the darkness as we travelled onwards, but yet we were bathed in this warm orange glow. It warmed the soul sending shivers down my spine. “Look at that Sky!” he said to me. I am, I answered my voice almost hoarse with emotion tied up in a truly beautiful experience. Taking us away from the situation we have been in and leading us hopefully towards the next step. The orange sky like a molten sea coming down through the hills that night pooling into lakes with pine trees all around as we reached the border and our welcome to Scotland. The smile spreading across my face, heading home at last. 

About This Time of The Year 

There is something about this time of year which I cannot explain. I don’t cope very well in the cold and it is usually the coldest month of the year, when the bitter winds blow and you cannot feel your face. In the last few months I have suffered with tremendous pain in my ears and throat on a regular basis and as yet unexplained. I was told that it was eustachian tube disfunction and prescribed something for it but it didn’t work. So I resort to plugging my ears with cotton wool every time I leave the house.

So in the coldest time of the year, why am I missing our beloved Scotland so much. True, for the past four years we have spent either Christmas or New Year and sometimes both up in Scotland, braving the cold and enjoying the scenery. It felt normal to us to be there. It was where we went for Kato’s holiday and this year we didn’t. This year we had Roki who hasn’t got used to travelling yet so has no desire to take such a trip. We hope that in time that will change. Oh I do hope so, then we will be able to show him our wonderful piece of heaven.

Meanwhile maybe because it was Burns Night a couple of weeks ago and there is a plethora of Scotland on our TV screen is what is making me homesick. I know that it is totally impractical at present but I was looking wistfully at jobs there earlier today.
I have been cooking these past few days. Things which I do not usually make and have enjoyed it. I haven’t been well this week, none of us have so this is my way of helping us to heal. By preparing food wholesome comforting winter food. I was also thinking of making marmalade again. I haven’t done for a few years now I used to make orange and ginger and add brandy for a bit of hooch. It was nice.

I am missing the hill and all of it’s little oddities. I know that I could not stay there in this cold weather. We would freeze and so would our water supply which would be difficult up there. I am craving the time when we are able to go there at will whenever we wish and do not have to rely upon friends for water or baths.

I am missing the trees, the wildlife and the light which brings me peace and calms me and it is this that I am thinking of tonight again as I cannot sleep. Yes I am tired. But for some reason I am wide awake and thinking of our sanctuary once again. He talked about the beautiful burn which he filled with stones for me, so that the water would run freely through it and we would not be overrun with mosquitoes. It nearly killed him as so many things almost did that year. He wanted to do it for me, to surprise me. I am glad I brought him home in time. He was ill that year too collapsing with blood poisoning a week after his return due to an infection in his jaw.

We have a supply of wood, but this time of year I know that it would not last us very long. I am conscious that it would not be easy to replenish it despite all the trees that have fallen. My first foray with a chain saw this year does not exactly qualify me to log 150 foot pine trees, I would need a much larger saw than we have and I still have not fitted the log burner in the other room or repaired the chimney. There is so much to do and now is not the time to do it. Yes I would need a team of helpers. I don’t have any.

I am constantly amazed at the people who can turn their hand to anything. I am a creative person and I also have a practical nature but my tools are old and a little basic and my knowledge is sketchy. I am willing to learn and give almost anything a try. I have thought of opening up the place to helpers far and wide and offering food and board in return for help to get our house fixed up but he will not entertain the idea. He doesn’t want people tramping all over our private place. He likes the solitude that it provides.

We have a select few friends I there, who do not encroach and are always welcomed when they arrive.

I wonder, Is the dream moving farther away as the years go by? Seven years this year we got this magical place and I thought back then that we would’ve been well on our way to having it sorted out. In truth we are such a long way off, not much nearer to the goal. Although at least the majority of the ground is cleared and we can see what we have now.

We have been reevaluating these last few days. Trying to figure out what is the best action to take. A step in the right direction to make some progress and changes for he better. We are undecided as to whether our southern lifestyle needs to drastically change but personally I feel that it has to. A move might be on the cards this year and this would not be an easy task. It is also likely to cost us financially and we are not set up for it despite my best attempts I am no nearer to getting full time paid work. All this time later, I still do not have my head above water which makes me hesitant rush in and do it all over again, I need to find the right job, which pays the bills without a shortfall.

The Daily Post – Overwhelming

Happy St Andrews Day

welcome-to-scotland

Since I have adopted Scotland as my true home over the past few years, is it any wonder that I am missing the place again already. I do have Scottish relations going way back, so it’s only fair to feel that it’s in my blood. Yes the wee one has settled in here down South for the time being and is behaving as though he can do what he likes along with the sulks and tantrums of the “terrible twos” when he doesn’t get it all his own way.  He will learn that even if you are a Malamute it doesn’t mean you have Carte Blanche to do as you please and house rules have to be followed. With an adopted pup though, there are going to be testing times, but on the whole he is settling well.

But I cannot deny, even though it’s only been a month since we came back that am missing our special part of our Scotland and our friends there and cannot wait to return. Although I know that I would not fare well up there at the moment now that it is so cold. It is cold here too now, suddenly this week, but heard from my friends there it was really cold. When a scot tells you that, then I know I wouldn’t be able to feel my toes for all the winter clothes I have.

Meanwhile friends old and new in Scotland and beyond, of you are doing anything remotely Scottish to celebrate this day, then I raise a glass to you and wish you a Happy St Andrews’ Day and invite you to soak up some of the wonderful culture wherever you may be.

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The Daily Post – Culture

Away to Anstruther

Away to Anstruther right by the Sea,

A walk in the wind along the quay.

Such wildness and wonder & sights to behold.

Of seascape and boats and stories of old.

A place to sit and enjoy the view.

Of harbour and gulls with me and you.

Chips, salt & vinegar there for our tea.

This is such bliss for you & for me.

Observing the world as it passes us by,

Hearing the gulls as they saw squawk and they cry.

Watching the darkness come over to night.

Clouds over yonder Red sky delight.



Friends old and New and Faith Restored

26/10/16

img_3123On this trip, we have concentrated mainly on refilling the wood supply, not working on the house or garden, we have also in the past week, an extra week which we had not anticipated and I was extremely grateful for, we have ventured out visiting places nearby in the car and exploring our surroundings. In the summer months, we have not done this much as our time is better spent working here.

Being surrounded by woodland, we would not have thought that we could run out. But unfortunately, the woodshed was cleared by thieves whilst we were away and we had to scout for wood, some of our neighbours and new friends have really helped us out, in return, they have some wood which once cured, will be usable. There is plenty around here, except that it is not dry enough to burn or cut in most cases.

One of our new friends who hauled the Bears, both big and small out of a ditch two years ago when they had been run off the road. Has become a friend who is currently stood out the back chopping wood so that we will have a supply again when we return. He has been an absolute godsend to us, since our large logs were too big for me to manage with the small chainsaw, I had no hope of splitting them. I learned to use the chainsaw, having bought all the kit, for safety I was finally allowed to give it a go, only to find that the saw had been wrongly assembled and the chain was totally blunt, which is why it was a complete nightmare. Our friend serviced it for me and I was then able to use it and spent a happy day cutting up logs which was very satisfying.

We also hauled some trees down and put them in the woodshed to cut next time. Give it another chance, hope that they won’t get it in again and that it will still be there next time we return.

The wood pile is now awesome with our combined efforts and in return he will also have wood for the winter. It has been pointed out to us on this trip, that wood is such a valuable commodity and should not be given away lightly. We have been told that the price of firewood when you have to buy it is £100 per tonne. If you leave it laying about, people will make the journey just to take it, thankfully our cottage is not easy to get to, but nevertheless, we are not immune.

One thing we are still torn on is whether we should bring the log burner with us next time to install. It would really keep us warm here, but I guess it depends on my partner’s health and whether we have a horsebox in which to transport it. It probably weighs 20 stone, definitely takes two very strong people to lift it, but would be absolutely wonderful in the living room here. We were talking of furniture this trip, and he almost weakened to a sofa for the lounge, but we really need to fix the roof first. A leaky roof is more important. But I am working on ways to fix that.

Today we got some boards, the guys on a local building site gave them to us, little do they know that we could probably fix the main part of the roof with those, if only I could get up there with the ladders!
We have been given pallets, offered wood offcuts and people have also offered to deliver what we need to us quite often free of charge. The generosity of spirit has often caught us by surprise and right when we least expected it has renewed our faith in humanity.

We have been blessed with the kindness of people around us. Whilst others’ may seek to take advantage and have their own agendas’ if we can keep them at bay, then we will get on here just fine. We are choosing our friends more carefully now, rather than my old approach of taking people at face value until they do you a wrong. We have learned to tread a little more carefully here in Scotland, it is easy to get your wires crossed and an English sense of humour is often misunderstood but generally we have found that if you are good to people, then they are good to you.

The Daily Post – Transformation